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COVID-19 in people with multiple sclerosis: A global data sharing initiative
,
Tina Parciak,
Clare Walton,
Lotte Geys,
Yves Moreau,
Edward De Brouwer,
Daniele Raimondi,
Ashkan Pirmani ,
Tomas Kalincik,
Gilles Edan,
Steve Simpson-Yap ,
Luc De Raedt,
Yann Dauxais,
Clément Gautrais ,
Paulo R Rodrigues,
Landon McKenna,
Nikola Lazovski,
Jan Hillert,
Lars Forsberg,
Tim Spelman ,
Robert McBurney,
Hollie Schmidt,
Arnfin Bergmann,
Stefan Braune,
Alexander Stahmann,
Rod Middleton ,
Amber Salter ,
Bruce F Bebo,
Juan I Rojas,
Anneke van der Walt ,
Helmut Butzkueven,
Ingrid van der Mei,
Rumen Ivanov,
Kerstin Hellwig,
Guilherme Sciascia do Olival,
Jeffrey A Cohen ,
Wim Van Hecke,
Ruth Dobson ,
Melinda Magyari,
Doralina Guimarães Brum,
Ricardo Alonso,
Richard Nicholas,
Johana Bauer,
Anibal Chertcoff,
Jérôme de Sèze,
Céline Louapre,
Giancarlo Comi,
Nick Rijke
Multiple Sclerosis Journal, Volume: 26, Issue: 10, Pages: 1157 - 1162
Swansea University Author:
Rod Middleton
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© The Author(s), 2020. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License
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DOI (Published version): 10.1177/1352458520941485
Abstract
Background:We need high-quality data to assess the determinants for COVID-19 severity in people with MS (PwMS). Several studies have recently emerged but there is great benefit in aligning data collection efforts at a global scale.Objectives:Our mission is to scale-up COVID-19 data collection effort...
| Published in: | Multiple Sclerosis Journal |
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| ISSN: | 1352-4585 1477-0970 |
| Published: |
SAGE Publications
2020
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| Online Access: |
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| URI: | https://cronfa.swan.ac.uk/Record/cronfa61475 |
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| Abstract: |
Background:We need high-quality data to assess the determinants for COVID-19 severity in people with MS (PwMS). Several studies have recently emerged but there is great benefit in aligning data collection efforts at a global scale.Objectives:Our mission is to scale-up COVID-19 data collection efforts and provide the MS community with data-driven insights as soon as possible.Methods:Numerous stakeholders were brought together. Small dedicated interdisciplinary task forces were created to speed-up the formulation of the study design and work plan. First step was to agree upon a COVID-19 MS core data set. Second, we worked on providing a user-friendly and rapid pipeline to share COVID-19 data at a global scale.Results:The COVID-19 MS core data set was agreed within 48 hours. To date, 23 data collection partners are involved and the first data imports have been performed successfully. Data processing and analysis is an on-going process.Conclusions:We reached a consensus on a core data set and established data sharing processes with multiple partners to address an urgent need for information to guide clinical practice. First results show that partners are motivated to share data to attain the ultimate joint goal: better understand the effect of COVID-19 in PwMS. |
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| Keywords: |
Multiple sclerosis, pandemics, COVID-19, data collection, registries, coronavirus 2, humans |
| College: |
Faculty of Medicine, Health and Life Sciences |
| Funders: |
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The operational costs linked to this study are funded by the Multiple Sclerosis International Federation (MSIF) and the Multiple Sclerosis Data Alliance (MSDA), acting under the umbrella of the European Charcot Foundation (ECF). The MSDA receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Canopy Growth Corporation, Genzyme, Icometrix, Merck, Mylan, Novartis, QMENTA, Quanterix and Roche. MSIF receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. |
| Issue: |
10 |
| Start Page: |
1157 |
| End Page: |
1162 |